Interrelationships Between Patients’ Data Tracking Practices, Data Sharing Practices, and Health Literacy: Onsite Survey Study

Abstract

Background Although the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy—an important construct that captures an individual’s ability to manage their health and to engage with their health care providers—has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients’ data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices. Objective This study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients. Methods We surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients’ retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants’ health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients’ immediate experiences situated within their clinic visit. Results We found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one’s health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants’ data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians. Conclusions Although tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals’ health literacy, empowering patients to effectively track and share their PGD is important—both technologies and health care providers can play important roles.

Health data sharing attitudes towards primary and secondary use of data: a systematic review

“…Concerns, benefits, and facilitators perceived by the study participants are presented in Table 6 . Privacy was the most reported concern when sharing PGHD for primary uses, 46 , 52 , 53 and transparency and privacy was considered significant in the case of sharing for secondary purposes. 43 , 48 Study participants perceived they would gain benefits from sharing PGHD for primary purposes such as improvement in delivery and management of health care for them and others, 43 , 44 while in the case of sharing for secondary purposes common good and better quality results were seen as beneficial.…”

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

“…As shown in Multimedia Appendix 2 [ 2 - 4 , 6 , 7 , 9 , 10 , 12 , 14 - 18 , 24 , 29 - 147 ] and Multimedia Appendix 3 , most papers were of a survey (n=68) or qualitative (n=41) design, with mixed methods (n=12), reviews (n=6), citizen juries (n=5), discrete choice experiments (n=1), randomized controlled trial (n=1), and experimental (n=1) study designs also used. Most papers discussed a willingness to share personal health data (n=52), EHRs (n=31), or genomic or genetic data (n=12), with either researchers (n=61), health care providers (n=27), or multiple stakeholders combined (n=38).…”

“…Developing a sound understanding of public willingness to share personal health data with third-party organizations or for secondary uses is therefore essential if we are to leverage the full potential of data sharing practices and inform international policy [ 14 ]. In addition, following the COVID-19 pandemic and possible related changes in public willingness to share health data, an updated synthesis of available literature is urgently required [ 15 ].…”

Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey

“…Interface design should focus on suitably informing patients about how their data relate to their health to facilitate rather than replace efficient clinician–patient relationships. Above all, risks to individual well-being should be avoided, as an intense “datafication” of personal health standards might prove to be more harmful than beneficial [ 81 ]. For instance, our analysis shows that those uncomfortable with sharing alcohol consumption, levels of stress, and physical exercise are less likely to feel motivated by receiving results about themselves.…”